Movement recovery after spinal cord injury with Theo St. Francis.
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Trust

9/28/2016

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​How many times have you heard something that probably seemed true, but you still were skeptical because you weren’t sure if you could trust the speaker?
 
Or how about when you doubted your ability to finish a race or make a deadline, but your team leader saying she believed in you made all the difference?
 
It turns out that this trust, which is necessary in collaborative settings, is even more critical when it comes to neuromuscular rehab...
 
 
Last weekend, I had the honor (and excitement!) of joining my trainer, Stephanie, in presenting the basics of our recovery approach to a group of Pilates instructors in Orange County, California. Over the summer, Stephanie was asked by the mother of a recently spinal-injured young man to help train his therapists and, since the evolution of our style has been such a collaborative back-and-forth, Stephanie wanted this to be a joint presentation with me.
 
Over several weeks, we kept a notebook of our strategies for creating links between the brain and paralyzed muscles – from the more technical aspects of exercises, to more nebulous elements like what it feels like to connect to a movement in an entirely new way. What emerged from our intense writing, photography and graphic design effort was a colorful manual that in many ways introduces the what, the how, and the why of our approach. It took lots of work, with many late nights, but we’re very proud of the result as a means to describe our method in support of the workshop.
Pilates for spinal cord injuries: Stephanie Behrendt and Theo St. Francis
I created the cover art from a pencil drawing my Dad did in architecture school in the 70s: coloring, cropping, and cleaning it for print. A multi-generational design! Photo: Theo St. Francis
Over our three days of presentation at Align Pilates Center in San Juan Capistrano, a really clear and somewhat unexpected priority emerged for us.
 
Stephanie and I had the goal of not only giving the trainers the tools they needed to apply their existing knowledge of movement to a spinal-cord-injured body, but also to help them understand just how profound the possibilities are for such a client to recover function. This is hugely important work – we’re talking about abilities like sitting up straight, feeling one’s own body, living independently. These are life-changing skills! With relatively little help, these trainers could have so much power to help the thousands who need it! All they require is some guidance about how to enable their SCI clients to connect; for example,­­ regressing complicated multi-planar exercises to their basics and supporting a body that is not yet able to support itself properly.
 
We wanted the group to understand their potential for facilitating bodily re-connection, and to truly believe in the process, so they would feel excited and confident in helping their current SCI client the very next day. Not to mention many others in the future…
 
These goals are highly relevant, but after getting to know better the group who invited us, we realized what had to be in-place before Pilates techniques could be effective: mutual trust between the recovering client and the neuro-recovery trainer. If one does not have confidence in the other, all bets are off.
Pilates for spinal cord injuries: Stephanie Behrendt and Theo St. Francis
Sharing understanding. Photo: Michael Blasky
​First, I would argue that the trainer can never be fully committed to helping unless she (usually it's ‘she’) knows that her SCI-client is putting in the effort himself (usually it’s ‘he’). I would say making ‘at least as much effort as the trainer,’ but it is still amazing to me how some therapists can have incredible resolve with a minimum of participation on the client’s part. It always really impresses me. That is a rare kind of therapist who can stay committed when the client is not, though, as there is little more discouraging for a trainer than seeing a client completely ignore his potential for recovery.
 
Second, the client can have his entire world changed – for good or bad! – by the attitude of his trainer. Why is this relationship such a significant element in SCI recovery? Because when the actual regaining of function is dependent on the mindset of the individual (it always is), and when that mindset is dependent on the intrinsic belief that healing is possible, the therapist finds herself midway through a rehab session at the intersection of hope and despair for her client. This is because:

  • successful connection means hope > belief > mental commitment > eventual progress in one way or another > more evidence for belief
  • unsuccessful connection means despair > disengagement > dis-motivation > further frustration for both when progress doesn’t come
 
At the moment when the scale could be tipped in either direction, the trainer has the power to nudge it toward the positive side:

  • good or bad connection > “This is just part of the process!” > belief that further commitment will enable change > back to work!
 
This is the constant psychological battle that plays out over minutes and months alike and, during a time when there is much uncertainty about the future for someone who has just lost access to most of his body, the therapist can keep the commitment boat afloat. A few ways she does this are:
​
  • being unrelentingly positive;
  • honing the ability to identify the smallest bit of progress when it happens, so that she can help her client notice and believe in the same;
  • developing an innate understanding both of how her client connects to exercises, and of why he is motivated to recover.
Pilates for spinal cord injuries: Stephanie Behrendt and Theo St. Francis
Workshop attendees at Align Pilates Center, San Juan Capistrano. Photo: Stephanie Behrendt
I feel very strongly about this because I have personally travelled the spectrum of despair to absolute belief. To be honest, sometimes it feels like I’m swimming laps between the two, oscillating back and forth. I’ve witnessed in myself what a powerful influence others can have on my headspace, again, for both good and bad. So, it was particularly instructive for Stephanie and me to observe some elements in the client-trainer relationship to address for those at the workshop. We did our best to facilitate increased understanding and trust not through pointing at it directly – it is never fixed so simply – but rather through the Pilates-based movements and subsequent verbal-tactile feedback that I know have helped me.
 
As you can see, awareness and trust in this relationship are critical for rehab when working with a therapist, just as they are in so many other settings: student-teacher, player-coach, community-police, public-government.
 
Think about trust when you think about the Black Lives Matter movement, and about Colin Kaepernick’s protests to unquestioningly stand literally and ideologically for the anthem of a country with a justice system that he and others view, and many statistics* point out, to be racist. How about Monday’s Presidential Debate for a contest that will be decided essentially on how trustworthy voters view each candidate? I think a lot about how we exhibit our inner selves in the relationships we have, because mutual trust is crucial for any collaboration, from SCI-recovery to participatory democracy.


*Read this NYT piece from last year and note how little seems to have changed in instances of police shootings. Also, regarding 'trust,' check out trustprize.org. My friend Miles is working to establish an award to honor communities that "build collaboration and partnership with local law enforcement." 
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How Lucky We Are

9/6/2016

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​I’ve been in a funky place this summer.
 
These last couple of months have been hugely successful since I returned from Hawaii, with growth in all sorts of ways. Some highlights for me included: 

  • competing in and finishing the Trans Tahoe Relay with five friends;
  • presenting the award that bears my name at the North Bay Aquatics banquet;
  • connecting with my ‘Pilates family’ at Pilates on Tour in Mountain View, and at a Santa Barbara workshop;
  • ‘backerflying’ (my swim stroke of choice) from Alcatraz Island to San Francisco;
  • completing a 2.4 mile swim in under 100 minutes in the Berkeley Marina;
  • seeing those who were freshmen on the swim team when I was captain now heading to college themselves;
  • two friends (both many years older) became mothers, birthing or adopting just a few days apart;
  • and significantly for recovery, connecting to standing exercises in a whole new way during my therapy sessions…which is HUGE.
 
It’s been a truly awesome time.
 
And yet, even as all this positivity was blossoming, some very tragic events happened as well. Two friends, both around my age, were separately killed in car-related crashes, one in Los Angeles, one in New York. Both events were broad-daylight, random acts by unknown, senseless drivers. And a third friend passed away around the same time when his dormant cancer returned in a ravaging way. Each loss impacted a separate community: my college class, my high school, my swim team.
 
I haven’t had much experience with death. A few relatives passed away when I was younger and less aware, and some members of my communities whom I did not know well. Death never came very close, either because I did not know the individual personally, or if I did, I was still at some distance subconsciously.
 
This time it is different. While I did not know any of the three especially well, that did not insulate me from emotion as it had in the past.
 
What I realized as tears came without warning during the memorial services I attended, was that I had shared a very potent experience with each of the three. 
​
  • Drew was the only other resident from my 707 area code in our MIT class, and we met for the first and last times at admitted students weekend, during one of the happiest and most excited times in our lives.
  • Tristan and I got through Chemistry together, and he turned me on to origami one day at the back of class my senior year, much to the detriment of my attention to the chalkboard. The Armadillo would not exist without Tristan.
  • John helped me discover the joys of lagoon swimming, and of open-water in general, and in the process encouraged my return to the sport that I so love.
 
Emotion from remembering past elation: each was present at a time when I was becoming me, and so they all became a part of me, too.
 
 
 
The end of August marked the third anniversary of the injury to my spinal cord. Three years is a long time, at least long enough for me to be complimented countless times by people who ask me how I stay so positive, how I continue to pursue my goals through it all. My answer is short and, in my mind, complete: it starts with gratitude.
 
The seemingly simple notion of consciously identifying the ways in which I am fortunate has helped me immensely. So much, in fact, that sometimes I am confused when someone says that they don’t think they’d “have the same courage” that I do. When I look at my goals, what they call ‘courage’ comes easily, as long as I remember all the reasons I am lucky.
 
How lucky we are...
To have life.
To have family, both blood-related and not.
To have power of mind, with the ability to set goals and envision reaching them.
To have passions about which to care.
To have opportunities to grow.
To feel love, and to love.
To be an individual.
To be present, now.
And, among innumerable others gratitudes, to have known Drew, Tristan, and John, each of whom lives on as an irrevocable part of me, and of so many others. 

Stunning Kapalua Bay sunset, Maui, Hawaii. theovercoming. Theo St Francis.
Kapalua Bay sunset. July 2016.
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